Work with brainstrust
A unique charity with an inspirational story and an exciting future.
We’re here to help people live life with a brain tumour. We do this by helping people become less alone, less afraid and more in control.
It’s no small task creating a ‘brain tumour support’ sector from scratch, but we’re well on our way.
Step inside brainstrust and you’ll find talented people working together to improve the lives of everyone living with a brain tumour.
Patient Involvement Officer
There are over 70,000 people living with a brain tumour in the UK. 16,000 more people are diagnosed each year. 20-40% of all cancers spread to the brain. Brain tumours are the biggest cancer killer of the under 35s. The disease is responsible for over 20 years of life lost in the typical patient, making it the most lethal cancer. What causes brain tumours is unknown and incidence is increasing.
But we know that these statistics don’t help you on the day you are told ‘you have a brain tumour’.
We know a brain tumour diagnosis is confusing, isolating and overwhelming. We know these problems are exacerbated by not being able to access care and information quickly and easily. And we also know that access to proactive support, and good information can improve knowledge and understanding, reduce anxiety, increase preparedness for events, instil control and improve satisfaction with treatment in brain tumour patients. That’s why we’re here. brainstrust’s support and information projects deliver measurable improvements in peoples’ wellbeing.
Ensuring that patients are involved in clinical research has recognised benefits. Research shows that patients have better outcomes in research-active centres and that patients who are involved in research know more about their condition. Patients and carers have unique experience and expertise which they can bring to research. This enables them to be part of the solution to the problems faced by researchers when designing clinical research. Clinicians who engage patients in research are also more likely to attract more funding. To date, brainstrust’s work in this area has helped attract £13.7m into brain tumour research at some of the most prestigious hospitals and universities in the UK.
Your role will be multifaceted, but ultimately will be to ensure brainstrust remains at the forefront of Patient & Public Involvement (PPI)
You will be working closely with both our Communications Manager and our Director of Policy and Support, flagging opportunities where consumer involvement should be sought for projects, as well as supporting the development and training of a growing PPI community as its first point of contact.